Judith: Stage IIIC Ovarian Cancer

Judith: Stage IIIC Ovarian Cancer

Learn about treatments for Stage III ovarian cancer here.

In September of 1999, while exercising, I had acid reflux every time I bent at the waist. When this continued for around three weeks, I made an appointment with my gynecologist. Years before, I had a hysterectomy for fibroids, but asked that my ovaries be left in if they were healthy so I could have a normal menopause. They were healthy. Thirteen years later in 1999, I had visions of an ovarian tumor pressing on my stomach causing acid reflux.

I saw three doctors in the same practice: Gynecologist #1 said the first step should be a transvaginal ultrasound. Gynecologist #2 did the test in the office a few weeks later and in October of 1999 it was normal. I was very relieved not to have ovarian cancer.

In January 2000, I saw Gynecologist #3 for my annual exam with additional symptoms of urinary frequency and urgency with pressure on the bladder. We discussed these new symptoms. A test for a bladder infection was negative. Ovarian cancer had not been ruled out as the doctor was not thinking along those lines, and I did not know that urinary problems can be predictive of ovarian cancer. I stopped worrying about it. But with breast cancer in my first cousin and my aunt (her mother) and abdominal cancer in our grandmother, I was right to worry. Breast cancer is a risk factor for ovarian. I learned: Know your family history.

By spring, episodes of constipation, an expanding waistline and serious fatigue were emerging, but I rationalized them away. Everyone is constipated sometimes, I must have gained weight and women in my family tend to have bellies. My ignorance that these were ovarian cancer symptoms kept me in the dark. I learned: If you are at risk, know the symptoms of ovarian cancer.

It was summer when I realized I had pressure on both my colon and bladder and alerted my internist by saying, "Something is very wrong." I am grateful that he immediately ordered a CT scan which showed wide-spread tumors in my abdomen and on the peritoneal walls.

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My husband and I were floored as we heard the news together in the doctor's office. I hardly remember anything Dr. G said, except, "This is not friendly," which he repeated several times. I was to make appointments from his secretary's telephone right away with a gynecologic oncologist for surgery and a medical oncologist for treatment. While I don't remember hearing the word cancer, I knew that making an appointment with two kinds of oncologists meant I had cancer. It was a cruel irony that my fear of ovarian cancer became a reality.

Two days later, I met with my surgeon, Dr. C. He told me a lot (more than I could take in) about removing as much tumor as he could, about my recovery and what to expect. The surgery was uneventful, and all visible cancer was removed. I was "optimally debulked," had late stage IIIC epithelial cell ovarian cancer (stage III ovarian cancer) and it was an aggressive Grade 3 tumor. The good news was no spread to the lymph nodes. All tumors more than 2 cm were removed: omentum, ovaries, fallopian tubes, appendix and peritoneal implants. A superficial tumor on the intestine meant I didn't need part of my bowel removed, and my bladder and kidneys were unaffected. I was 58 years old and felt very lucky.

At the first post-surgical visit, the doctor again shared volumes of information that I was too sore and tired to hear. Before I left he said, "By the way, have a port put in before you start chemo." I didn't know what a port was and I didn't know who could tell me. I called the SHARE Helpline and a wonderful ovarian cancer survivor answered all my questions and said, "I had a port and it saved my veins from all the sticks I needed over months of IV chemo." I was greatly relieved and so grateful she was there for me. That was my very first contact with SHARE. Today, I work on the Helpline several times a month and I'm thrilled to talk with women diagnosed with ovarian cancer who need information and support as I did in 2000.

Two weeks after surgery, I started working with my new oncologist, Dr. O. "What are my chances?" I asked. "You are an individual," she said, "and survival rates are statistics based on thousands of women." She continued, "The statistics will not predict how you will respond to treatment. But I can tell you we're going to make a great team." In her fluorescent office, I felt as though warm sun was beaming on me. We hugged. She was right: we worked very well together.

At Dr. O's suggestion, I enrolled in a Phase III clinical trial to test topotecan, already known to be an active agent against epithelial ovarian cancer. The test would compare the years-old intravenous method done in a doctor's office with pills that could be taken at home. I was randomly chosen to get the topotecan orally. A few days after starting the pills, I started to feel sick. In another week, I was taken by ambulance to the ER. Topotecan pills had destroyed the lining of my colon, leaving me hospitalized for nine days with bloody diarrhea and in need of four transfusions. The good side of this hellish experience was that topotecan, in addition to destroying the epithelial lining of my colon, also killed a lot of epithelial ovarian cancer cells.

It was six weeks before my blood counts improved and I had enough energy to leave the house. I started five rounds of the gold standard, taxol and carboplatin. A few days of nausea after treatment with three weeks until the next treatment was a walk in the park. After topotecan, I knew I could do this.

Toward the end of the taxol/carbo regimen, both doctors mentioned the end of chemo was near. I had misgivings about ending and asked myself what I hoped to accomplish. I knew recurrence was likely. My intention was to mount an intense attack on my ovarian cancer cells immediately after diagnosis, not wait passively for a recurrence. To do that, I wanted another treatment. I asked both my surgeon and oncologist to put their heads together and come up with an idea for one more chemo. My doctors may have thought I was crazy to ask for more, but they took me seriously and recommended intraperitoneal (IP) chemo. I re-learned an old lesson: Identify what you want. Then ask for it.

Dr. C wanted me to have second-look surgery, in which many biopsies everywhere in the abdominal cavity are taken through three small openings in the belly. It is not routinely done anymore, but it seemed like a good idea. In my case, every biopsy was negative for cancer including the abdominal washes! I learned how unexpected this was because it was a big surprise to my doctors.

At the second look surgery, an IP port was surgically attached to my left bottom rib. The external port has a long flexible tube that dangles into the addominal cavity. I was now prepared for IP chemo.

The first IP treatment led to an intestinal blockage which is not an expected side effect of IP chemo. No one knew the cause. I reported every day to Dr. O's office for hydration because I could not keep liquids or solids down. After about a week, she made it clear we could not let this go much longer and I would need colon surgery to clear the blockage. Over the weekend, the blockage started to resolve, although it took weeks before I could eat normally. The two other IP treatments were canceled and that first IP chemo was my last chemo in the spring of 2001.

Several years later, a consensus of gynecologic oncology organizations reported the end of an IP clinical trial that was so effective in prolonging time to recurrence that the researchers wanted every woman in the trial (not just half of the women receiving IP chemo) to have the opportunity to have IP treatment. It was a rugged treatment with many side effects and many women, like me, were not able to complete the full regimen. It was found that having even one treatment was associated with prolonged delay of recurrence.

Today in 2013, twelve years after diagnosis, I am healthy, my CA125 (tumor marker) level is 2.3 and has been in the normal range (less than 35) since my first chemo. I still design diamond jewelry, work that I love, and travel for business and pleasure. I was there when my son and daughter-in-law were married 10 years ago. I just celebrated my 50th wedding anniversary - to the same man! No one could have predicted that I would have twelve more years of healthy life.

In the ovarian cancer community, we do not speak of "cures." I have been fortunate not to have had any recurrences. I know that the longer I survive, the lower is the possibility of recurrence, but it will never be zero. I can live with that.

I am fortunate that I have lived long enough to have to deal with signs of aging. I forget where I put my cell phone. I put up with a body that is not as spry as it used to be. I had a knee replacement 18 months ago. When I tell people I'm 71 years old, I'm bragging. I can live with all of that, too.

Looking for more information about Stage III Ovarian Cancer? You may find one of these webinars helpful.

Author

judith_ovarian_cancer_survivor

Judith

 


  • H

    My mother has been diagnosed with stage 3b ovarian cancer of an aggressive form.
    Life seems to have stopped for the moment, and I can't remember the last time we just went out, shopping or for a tea. Now she seems frail (she isn't by the way, she's very healthy – we all just think we have to wrap her up in cotton wool). I feel too young to lose my mom, I'm still in my twenties, she is only 56.
    Life is quite slow and sad at the moment and I dread the next stages, and the stages after that, but reading your story has given me hope.
    Thank you x

  • Kelly

    Thank you for sharing your story, Judith. I am 48 and just completing the IP treatment for Stage 3C Epithelial Ovarian Cancer. I know that the stats say the median survival rate is 5 years, so seeing you at 12 years out with no sign of recurrence is inspirational. I will complete my six rounds in three weeks and I am sooo looking forward to putting this behind me as much as possible.
    Thank you!

  • N. Ali

    This story brought so much hope to me. My mom was recently diagnosed with Stage 3 Ovarian Cancer and had surgery to remove the tumors that were on her ovaries and peritoneum. She is still recovering in hospital and the doctors hope to start chemo as soon as she heals. I am just so scared and worried for her.

  • suzykeens

    Thank you for sharing your story – you was very brave – so glad you are doing so well x

  • Mary

    Dear sisters,
    I have a quite bitter experience. My beloved sister (53Y)who is a teacher,identified with epithelial ovarian cancer, stage IIIC in December 2014. Doctors told that nothing to worry and Immediately started chemo, done 3 within an interval of 21 days, quite normal though she loose weight, debulking surgery done in March. According to the surgeon everything was removed and operation was 100% success.After 1 month chemo started again done 2 more. Before going to the third chemo in that cycle, she had loose motion as well as vomiting, hospitalised on May 12, put on drip. after 3 days she suddenly became unconscious and doctors advised to do 2 dialysis. The ureter was blocked due to the growth and put one tube through one ureter through normal path and another tube directly from the kidney to an external bag.This hospitalisation lasts for 14 days.We as well as the patient were so upset and she stopped talking with anybody. Actually she joined duty on May 2 before vacations.We consulted a gynec oncologist who advised to do a PET Scan in which it was revealed that the cancer was affected to not only intestine, but around the ureter, liver and bone.We couldn't understand what had happened. This mean that the growth spread while taking chemo? Her CA125 was came down from 1914 to 79 after surgery.We never expected such a twist.Actually I was reading all comments shared by similar women in this page and the energy I got was shared with her daily.Both the patient and we were so hopeful before we get such a result.After the PET scan her condition became very worse, started vomiting and loose motion.After 2 days severe pain started. Doctor gave 5mg Morphin twice within an interval of 2 hours, she lost her sight and consciousness and remained in the same state for 10 days and on 4th July, 2015 she passed away.Everything was like a dream, I cannot even accept what had happened.All of us are mourning on this unexpected event.

  • a friend.

    thanks for sharing your story. I work in oncology research and its stories like this that keep me inspired to work harder!

  • Sherry Curro

    I have stage 3 ovarian cancer I've had 9 rounds of chemo. Iwas supposed ha ve today but my platelets were so low so we had to postpone Iwill be going to the doctor tomorrow I have another blood test and see what my platelets are but I am absolutely terrified .All I think about is dying and I'm Looking for stories were people with a cancer stage III has survived I need someone to talk to That has the same kind of cancer I have that maybe could give me some hope.

  • Another Judith Z

    I know that I was available for my wonderful friend Judith but when I read her experience, I want to cheer all over again. Her persistence and determination along with quality doctors have brought her to her 50th Anniversary celebration. And with great joy we will celebrate!!

  • jo

    Hi.Just read your story. I have ovarian cancer had a total hysterectomy, just finished my last chemo. Now my oncologist/gynecologist has explain a maintenance program to extend the time before it will more than likely come back. I am 60 years old in a week and he said without the averstylyn(sp) injections for approximately 15 weeks it would more than likely come back in 2 years. Does this sound like a good idea? For my age and being stage 3 I only have a 35% change of survial. I would love to increase that if possible to many more years. I just became a grandmother over 18 months ago and want to watch her grow up. Thank you.

  • Debra Cazeault

    Thank you so much for your insight on Ovarian Cancer. I was diagnosed this past December (2014) with stage 3, I had the surgery (with lots of complications) and I just started my chemo regime within this past month. Your story is the first positive thing that I have read . All the stories have been about women who've only lasted 6 to 8 months. I'm a fighter and I want to win this battle, but its very difficult to read negativity and be positive about the outcome. You've given me a lot of HOPE

  • Judith Fox

    Judith Z. is my friend of many years who was with me all the way through chemo and after. During the illness that followed my first chemo when I was sacked out on the couch and unable to lift my head, Judy Z. was in the kitchen talking with my husband Jerry. This friend made a big difference when we needed her.
    Judith
    Stage IIIC

  • Judy W

    I loved reading your journey and it gives me hope. I am recuperating now from a complete hysterectomy where they found two cancerous tumors; one on my uterus and one on my ovary. I have been diagnosed with Stage 3 ovarian cancer. It is scary and don't know what to expect as I work through all of this. I will be starting chemo next week and just hope I won't be real sick. My brother lives with me as he lost his job and I worry about where he will go if something happens to me. Two weeks ago I had to put my 10 year old lab to sleep as she had cancer. Everything has kind of hit me at once and I am trying to stay strong but it is hard. I will fight this and want to get back to normal so I can continue traveling and spending time with my friends.

  • Barb Marquez

    thank you for your story, It gives me hope. I'm not ready to leave this world.

  • lance riley

    Am I able to get a hold of the person who posted this thread? I'm very worried and would like to talk. If available still email me at [email protected] I have serious questions about this. 🙁

  • Linda Ellingson, Oregon

    I can not thank you enough for your story. I just finished chemo being diagnosed in June 2014. Scans were good and I am a healthy 65. I find it difficult to get on with life. The tiger in the closet can really get to me some days. I have a wonderful family and supportive friends along with 5 very small grandchildren that I adore!!! I want so much to enjoy the rest of this life I have and not worry every day. Knowing you made it has given me great hope. I can't thank you enough!!!

  • Renee M

    I was diagnosed with stage 3c in October of 2015. Had surgery and started chemo in November 2015. It's every Tuesday for 18 weeks . March 22nd is my last treatment and I'm nervous as heck. I am scheduled for my PET Scan April 11th. I have also tested positive for braca 1. Which both my children have been tested as well. My son tested positive and daughter tested negative. It really killed me inside that I had spread it to one of my children. Read your story and want you to know you are an amazing woman.

  • Debbie Musolino

    Wow, I have hope again..thank you ladies..Debbie

  • Lucille

    I just complete my final IP chemo treatment and am scheduled to get the port out next week, I was hoping it was over, but I guess it never really will be, I will stay vigilant and wish you continued good health.

  • Salve

    Thank you for sharing this wonderful story! My older sister had a hysterectomy done and was diagnosed with ovarian cancer 1week ago. My family and I are devastated, trying to figure out what & how I can help her go through this? So many things go through my mind, I'm praying hard, and want her to survive just like you did. Your article gives me a lot of hope & strength to fight this battle right next to her.
    Thank you so much, I will contact SHARE for support or ask her to call as well.
    Thank you so much & may you live many many years to come!

  • Rj

    I have been sitting here crying until I read this. My mother was diagnosed 3c ovarian end of last year, underwent surgery, chemo and avastin but it's still there. Her ca125 however dropped from 1000s to 100 but now rises to 1000 and more, seems to continuey exponentially increase and she is scared but wanting to be positive. She had a pet scan today and we all wait, but h can see the doctors attention to detail is great and is helping. We push ahead in light of the braveness and positivity. Thank you so much

  • La Verne

    I have many of the symptoms of ovarian ca however, I'm uncomfortable asking my doctor to screen me for it.
    I was a RN for over 40 yrs and tend to be sensitive to my body changes.
    I have fibromyalgia and IBS so, that clouds my symptoms.

  • None

    I have recently been diagnosed with ovarian cancer with secondary fallopian tube cancer with deposits near the top of my omentum. I opted for surgery to remove the cancerous cyst and ovary and fallopian tube and omentum. I asked to keep the other ovary and fallopian tube as I was trying for a baby and also don't feel ready for early menopause. Sadly the oncologist says as I have high grade stage 3 the chances of it spreading to the other ovary is about 90 per cent. So as far as having another baby (my only child died before his 1st birthday) or avoiding early menopause is no longer possible. I cannot express how devasting all this is. On top of all this the only cancer drug I can take is the one which makes hair fall out. I have long hair so this is very upsetting. I cannot take the other drug as it can cause hearing loss and i've already lost most of my hearing so can't risk what little I have left. As I can only take one of the drugs I will need weekly chemo and after this another cooperation to remove the other fallopian tube and ovary. I am scared. I don't know if I can cope with all this. Cancer, a statistic ally poor prognosis and shortened lifespan , chemo, another op, lost fertility, menopause… Somehow I must find the strength within, some how, like other ovarian cancer suffers and survivors. I hope to find the strength and hope

  • Judith Fox

    Dear Suzy,
    Thank you for your kind words. I am very glad you enjoyed reading my story. I don't know if I would call myself brave because I did what I had to do. I wanted to live, and there weren't many options for me.

    I don't know if you are on SHARE's online Newsletter because you are affected by your own ovarian cancer or someone close to you is dealing with it. But, you've come to the right place for support. If you or someone close to you is living with ovarian cancer, I hope you will call the Helpline. The toll-free telephone number is at the top of this page.

    All of us who answer the phone calls are survivors and we can be a big help when someone needs a shoulder to cry on or current information about this awful disease.

    xoxo,
    Judy

  • toni

    Hi Ladies, I am on this site to see why my stomach is swollen, sweating, my skin looks like I went on a hike without deet, severe fatigue, constipation/gas and scared. I called Cleveland Clinic yesterday and spoke with a helpline nurse. The lady on the other end wanted to know why I wanted to see an GYN doctor. I told her I was researching my symptoms as I do not need anymore surprise doctor bills with new insurance ahead for me. My symptoms from the Mayo Clinic checklist suggested possible Ovarian Cancer. I told her this and she reprimanded me for going on the internet and trying to self-diagnose. I was asked if was sweating at that exact moment and I said no and no fever, no pain, thus you do not have Ovarian Cancer so maybe see a neurologist if your foot is going numb. (Had back surgery 2 years ago and mentioned this). Today, here I am reading your personal stories crying as the disease is silent because this woman told me in so many words, "Silence."

  • Mayuri Patel

    Thank you Judith for sharing your story. recently my best friend diagnosed with ovarian cancer and this is very help full to motivate her.
    Thanks so much….Continue to be well and blessed.

  • Lorraine

    Is Judith's cancer clear cell ovarian cancer or non- clear cell?

  • Judith Fox

    Dear Barb,
    Shortly after I was diagnosed, I read on the internet or in a book, "There are survivors in every stage of ovarian cancer." This simple statement allowed me to hope that I might be a survivor of stage IIIC.

    I knew it wasn't a guarantee. There are no sure outcomes in the life of an ovarian cancer survivor. But it allowed me to hope I might survive and it meant the world to me.

    Whatever your cancer situation is now, I hope you have found support from family or friends or from a cancer support group where you can talk about how you feel and get some of your fears out into the open when you are with caring people. There are online support groups. And, of course, there is the SHARE Helpline which has many volunteers, all survivors, to take your call and answer questions or just listen to your story.

    Your saying my story gave you hope means a lot to me. Thank you for writing and letting me know how my story affected you.

  • Liz Arbogast

    Thank you for your story. My name is Liz, I have been diagnosed with Stage III A Ovarian cancer in 2014, at 51 yrs. They removed a 2 lb. Tumor, my appendix, all Omentem, and scraped my colon. 2 nd surgery 8 weeks later removed 15 lymph nodes. 2 had cancer cells. I had 14 round of chemo with IP. It's wonderful to know you and others are surviving more than 66months. Thanks for giving me hope.

  • Dan L.

    Your posting was very helpful . . . My wife is two months deep in treatment for what I think is pretty much what you faced. Thank You for sharing 🙂

  • L. Costa

    Your story has given me so much hope. I was diagnosed in 2012. I recently had a second surgery. I will be starting chemo next month. When I read your story, I was full with hopes and positive vibes.
    Thank you for sharing your story.
    Continue to be well.
    Lourdes

  • Lakhani

    My mom is diagnosed with an ovarian cancer stage 3. She's now 63 years of age and very weak. She was diagnosed with it two months ago. Ever since; she's had 4 doses of chemo already. After the 4 th doze ; her immune system has gotten very weak and she is still at the hospital struggling. Also after getting a 4 doze of chemo since her immune system was very fragile; she got an infection called ecoli. So now she is battling with that; doctors are saying that it's 80 percent clear and soon to be ecoli free. So now; looking at her she she is very weak; been having pain in her belly; has bowel movement but cant go to the bathroom ; he appetite has diminished. Any thoughts ? Please share. Lakhani

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